Newly Diagnosed and Confused

Melrae

I was diagnosed with DCIS in my right breast (inner upper quadrant) after a mammogram, ultrasound, and sterotactic needle biopsy (2/18/11). The path report says, linear extent of .8cm, grade 2, solid pattern, comedo necrosis and microcalcifications present in DCIS & non-neoplastic tissue. They recommended a MRI and a second biopsy of the outer upper quadrant, where they found LCIS, pleomorphic type, linear extent of .5cm, grade 2, central comedo type necrosis. Both show est/prog positive. I'm now waiting on the BRCA results... it's been almost 3 weeks since the blood draw.

My surgeon met with the tumor board yesterday and it was decided that the first dx was NOT DCIS, but LCIS. She says we'll talk after the BRCA results come in, but she feels that this was good news and that possibly all that will need to be done is lumpectomy w/o rads and no chemo.

Here's where I'm confused... I've been researching everything on my path reports and it seems because of the grade 2, comedo necrosis and the pleomorphic type LCIS that I'm at a higher risk for invasive BC later. But that some things I read, LCIS isn't even considered cancer.

Has anyone else out there been diagnosed like this that can offer any insights? Maybe all this waiting is getting to me and I'm researching "too much". 

Jill42_fromUtah

It is interesting that there is significant confusion relative to the difference and similarities of DCIS and LCIS. I asked my BS what the criteria is in determining one or the other and she said it is a call that the pathologist makes. In my situation because i have LCIS and ADH my cell activity is manifesting itself in both ducts and lobes so that is what lead to my question. When i read your description above i would get another opinion. Pleomorphic LCIS is not traditional LCIS and warrants different treatment suggestions. I would jump over to the LCIS board for further discussion. the LCIS board discusses the pleomorohic as well as the of treatment options that are in front of us all. Welcome!

Jill

Anonymous

Melrae---there is a lot of controversy surrounding LCIS, but pathologically it is a stage 0, in-situ non-invasive bc. I was diagnosed with LCIS over 7.5 years ago--had lumpectomy, took tamoxifen for 5 years, now take evista for further preventative measures, and continue with high risk surveillance of alternating MRIs and mammos every 6 months with breast exams on the opposite 6 months. Mine is classic LCIS, not requiring clear margins or radiation.  But apparently the pleomorphic type (PLCIS) confers somewhat of a higher risk level and is treated more like  DCIS, so some have had radiation recommended I think. I would definitely get a 2nd opinion on the pleomorphic nature of your LCIS and opinions about its treatment.

Anne

rianne2580

Melrae,

17 yrs ago I was dignosed with DCIS and LCIS. I had a lumpectomy, no chemo, no radiation and did not have a recurrence until Oct. 2010 of DCIS again. In Jan. 2011 had an MRI and a needle biopsy. Found IDC, very small, less than 4mm. I finally decided to have a RMX. I was upset when my surgeon took a bunch of nodes for fear of lymphedema. But even after all these years, it looks as though I wll not have chemo or radiation as all those nodes were clean.

It's a tough call, but your breast specialist knows what to do. I always encourage 2 or 3 opinions.

Rainne

Melrae

Thank you ladies for your feedback. I will be sitting down with my BS as soon as my BRCA results are back and will definitely have questions for her.

Jill... I read many of the discussions on the LCIS board which is what caused me to do more research about all the aspects of my path report. The more I research, the more questions I have. I've had several people tell me to stay off the internet about it... but, because of who I am and how I tick... I have to know what's ahead of me and therefore NEED to research.

I really appreciate the feedback, as well as the other discussions offered here. 

dickisonmomma

Melrae,

I had a MRI done 1/10 due to my maternal grandmother and mother having IDC before menopause. I had half of my left breast light up and random biopsies had ADH, LCIS and pleomorphic LCIS.  My surgeon was concerned about being able to clear the margins of pleomorphic cells since it was so wide spread.  I opted for a bilateral mastectomies with sentinel nodes with reconstruction.  I had one oncologist that has only been doing breast oncology for 30 years tell me absolutely no Rads and one Radiation oncologist tell me very hesitantly yes to Rads.  I decided not to do any Radiation. The one oncologist felt after looking at my pathology that I would have had an invasive cancer within 2 years if I had taken the wait and see approach.  Who knows, everyone has an opinion.  I just knew I was only 39 years old with 3 kids and didn't want to be possibly losing my life like my mom did at 52 years old, so I went the aggressive route.

P.S.  I'm BRCA negative